The European Respiratory Society is funding a new project to improve diagnosis and care for primary ciliary dyskinesia (PCD) and ELF is looking for people with experience of PCD to get involved.
PCD is a rare genetic chronic condition that causes mucus build up, leading to swelling and infection in the airways and ears.
The project is a clinical research collaboration (CRC) called BEAT-PCD (Better Experimental Approaches to Treat – PCD) and is a network of people with an interest in PCD. The aim of this CRC is to advance research into PCD to improve diagnosis and patient care.
BEAT-PCD is looking for people with PCD, suspected PCD or people who have family members with PCD to join and advise this new European initiative.
The aims of BEAT-PCD
What would you be asked to do?
BEAT-PCD wishes to involve patients in all their research activities and encourage communication between patient organisations from different countries. Examples of things patient representatives will be asked to do include:
We want to encourage people from all across Europe to get involved. If you are interested in joining with other patients and healthcare professionals in the BEAT-PCD network, please contact Jeanette Boyd at email@example.com
BEAT-PCD has launched a research project to learn more about the impact of COVID-19 in people with PCD. It involves PCD patients with COVID-19 completing a series of questionnaires to monitor the progression of symptoms.
Learn about the conditions that can affect our lungs and access our lung condition specific information.Read more
Learn more about life with a lung condition and things you can do to improve your quality of life.Read more
Learn about the factors that can cause lung disease and the ways to reduce your contact with them.Read more
Sign up to our free monthly newsletter to get the latest information and research news on lung conditions, plus views from experts and patients! You can unsubscribe at any time.